The Neurofibramatosis Association

Formed in 1981 the Association is a national charity dedicated to helping those who are affected by neurofibromatosis (Nf) directly or indirectly. They employ dedicated hospital based support workers around the country who provide help, support and advice not only to those affected but also to their families and the professionals concerned with their care. They also fund research into both strains of the disorder.

Nf is something you are born with - it cannot be caught - although some of the signs do not appear until later in life, often around puberty. About half the cases of Nf are inherited from an affected parent whilst the remainder occur in families where there is no apparent evidence of the disorder.

Nf Type 1 (Nf1) is a genetic disorder affecting about 1 in 2500 worldwide, more than 23000 in the UK. While those with the condition have a 50-50 chance of passing on the disorder to any or all of their children, 50% of all cases occur in families through a spontaneous mutation of the affected gene. Complications include, learning difficulties, behavioural problems, high blood pressure, curvature of the spine, malformation of the long bones, tumours on the nerves of sight, internal, spinal and brain tumours (usually benign), speech problems and an increased risk of epilepsy.

Nf Type 2 (Nf2) is much rarer, affecting 1 in 35000 worldwide. The most common site is associated with the acoustic nerves usually leading to hearing loss in late teens and early twenties, tumours are also likely in the brain and spinal areas, and there is a significantly increased chance of cataracts. Nf2 can also lead to general weakness and levels of paralysis.

Both can cause disfigurement, disability, disadvantage and premature death. Each year more than 400 children are born with Nf, no family is immune.

The Association has a number of well known patrons including Gillian Anderson, whose brother is affected, Ray Brooks, Simon Callow, Fiona Fullerton and Julie T. Wallace.

For more details of the Association's aims and work follow the link to their website.